Good Weekend Of Sleep

FINALLY!!!!!! Ty slept all night Friday, Saturday and Sunday night!! What a great weekend. I can now say Felbatol past 4:30 is bad for Ty. I put a couple lara bars and meds in my car so now when I pick Ty up from Tine's I will be ready.

Saturday Wilcox and I took Ty to see Blind Side. It was not a sensory friendly we just thought we would see what he would do. Ty fell asleep on the way to the movie and continued to sleep the whole way home. It was successful for Amy and I we got to see a good movie. I had to nudge Ty a couple of times so his snoring did bother the other movie goers.

Saturday night the boys got to go to the farm and hang out awhile. Cyndi and Lynda said Ty did great out there. Ty found some paper hidden and he was in heaven. Yesterday was the Hayden monthly birthday party and Ty did great again. I was happy we didn't have to sit and watch Ty the whole time. Last party we were still not leaving him alone since he had had the stitches so this one was much less stressful for me.

We have Ty's school meeting tomorrow.

-Aim

No Sleep, No Sleep, No Sleep, Sleep, No Sleep, Almost Sleep-Med Update

It's been a crazy week. I will start with the weekend so I have all Ty's Sleep recorded.
Friday and Saturday-I think up at 2:00 both days. That was too far back to remember
Sunday-Up at 10:54, finally slept a little I think around 4:30 or 5:00.
Monday Slept All Night!!!
Tuesday-Up at 8:30ish I put him in bed with me fell asleep 9:30 then up 2:00, I stayed with him until 3:45 then was brave and tired so I went to bed and left him alone. He either slept or was quiet because I slept the rest of the night.
Wednesday- Up at 11:00. I put him back in his bed 3 times and by 11:32 he was asleep in his own bed and was still asleep when I left for work this morning.

Dave has been out of town all week so it was up to me to see if Ty could be trusted in his own bed, alone, without hurting himself!!! It was hard folks but we did it!!!! I trusted Ty and he didn't end up in the ER!!! Happy Happy Day. Wilcox has helped me out all week in the evenings so that has been very helpful. She offered to stay each night but with Dave traveling more now I needed to figure out if I could do it without him. Not easy, but all of us survived.

Our St Louis trip was fun and stressful. I would guess that Mom and Wilcox will just say stressful. We took Ty, we can now say we tried it and it didn't work. He is just so much happier at home. Next time we take a vacation I will have to tell E that Ty will have to stay home. It was super sweet of E for wanting Ty there but it just didn't work. E was wanting to do things that Ty couldn't do so Mom, Dad and Wilcox spent the weekend in the hotel with him. He is not easy in hotel room that's for sure.

I talked to StL Doc on Monday. I told her we were dying without sleep and she would have to do something. I took it upon myself to increase his melatonin from 9mg to 12 mg. I did that last week and the weekend was still rough so that didn't help. A couple weeks ago she told me if things didn't get better to give 5mg of clobazam in the morning. We tried to take him off that one all together but put him back on 10mg at night a couple months ago. So Monday I put him back on 5mg of Clobazam in the morning. Also last week we starting giving him Felbatol at 4:00ish instead of with his night meds. Lots of changes in the last couple of weeks. I am hoping with all the changes that next week will be better.

Recap on Meds:

Felbatol - March 17th, changed time from 6:30 to 4:00.- 1 tab in am, 1 tab at lunch and 1/2 at 4
Melatonin-March 14th Increased to 12mg- 4 tabs at 6:30
Clobazam-March 22 Started giving 1/2 pill in the mornings again.- 1/2 am, 1 tab at 6:30
Cholonodine-No changes 1/2 am, 1/2 noon, 1 1/2 6:30

Ty is going to get to go swimming at school once a week for awhile. They are going to do a 3 week trial run and see how he does. I know he will LOVE it so I am hoping he continues. He also started back at the YMCA this week swimming.

Dave comes home today!! Things will be a little more back to normal.

-Aim

Bad Night At The Hayden House

My sweet little Ty fell asleep on the couch next to me again. I gave him a bedtime snack again and he sat on the couch so nice. Things were going good. Stupid me I know better than staying up til 11:00 but I did. 12:02 Ty was up and humming. We took turns staying with him til 3:40 and I decided since he hadn't banged his head all week and I was super tired he could stay in his room alone the rest of the night so maybe I could sleep another hour or so. He was so loud I didn't sleep much so I should have just stayed with him. Dave went to check on him this morning and I guess he chewed on his window sill from 3:40 to 6:00. I was not in the mood to check out the damage so I have no idea how bad it is. Man there is always something for me to worry about. Most people don't have half the crap I have to worry about and think their lives are so terrible!!!! I feel I can have a poor pitiful me day!!!

We saw Dr Gupta yesterday. I do LOVE that man. He is so willing to share stories about other kiddos he sees and always thinking of things that might work for Ty. Yesterday he told us to call Ty's dentist and ask about Gingivia Hyperplasia. Of course I had never heard of that so add one more thing to my list of things I thought I would never need to know about. We have an appt with his dentist in June to find out more about it and if Ty has it. I am hoping he does. If he does they can do a procedure on him that should decrease drooling!!!! Oh how I happy I would be for that!!

I need to call StL and let them know about Ty's sleep pattern. Not sure if they can do anything but at least I want to ask.

-Aim

Imitating "eat"

Here Ty is working on imitating "eat". He's got this word down! :) He is watching pictures on a computer screen of him eating, Ethan eating, Mia eating and other foods that he eats! Nice job Ty! :)

Imitating "swing"

Ty is working on imitating "swing"

Lauren helping Ty with blocks

Lauren is being a big helper again handing Ty his blocks for stacking! Such a good girl!

Ty needed a bedtime snack!!

We all slept all night even the neighbors dog!! Happy Day!!! Last night E and Dave went to the Bear and Fish store so it was just Ty and I. He was happily playing in the basement so I let him stay up a little late to see how he would do. At 7:20 I went down and told him it was nighty night time and he needed to come up. He came upstairs with me. I was in the middle of watching the Bachelor 20/20 special so I let him stay in the living room with me. He didn't seem tired at all so I got him a lara bar to see if he needed a bedtime snack. I asked him to come over ( he was by the TV and I was on the couch). He looked right at me came over and sat on the couch. After a bite he got back up to the TV and I asked him again to come back. He sat right down and said an approximation of more. He got up again after his bit and I said if you want more sit down. He quickly sat is rear back on the couch and starting pointing at his mouth. We repeated this until the lara bar was all gone and I had to quickly run to the kitchen it get another lara bar as he was yelling at me more, more, more!!!! He sat on the couch for the other bar then settled down. 10 minutes later he was sound asleep on the couch with me while I watched my show!!! He was so sweet.

Ty sees Dr Gupta this afternoon.

-Aim